FUMS: Giving Multiple Sclerosis The Finger

40 Episodes
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By: Kathy Reagan Young

A podcast providing information, inspiration and motivation for living your best life with Multiple Sclerosis. Learn to speak to this disease as it deserves - tell it FUMS every day!

FUMS 119 - National Lampoon's Chronically Ill Christmas with The MS Pod Squad
#119
11/22/2022

Being a podcaster can be a lonely life. So what better way to begin the holiday celebrations than getting some of your favorite MSers together to talk about our plans for the season? 

Alongside my guests, we talk about some of the things that can play on our minds during this time of year, particularly when combined with having a chronic illness like MS. 

Dan & Jennifer Digmann talk about how to handle the stresses of maintaining relationships. Ardra Shephard is here to talk about staying fashionable and feeling good about yourself. Then Kathy Chester covers th...


FUMS 118 - Comic Artist and MSer Brooke Pelczynski's Perfect, Shitty Situation
#118
11/01/2022

Brooke Pelczynski's life with Multiple Sclerosis is an inspiring example of someone taking their diagnosis and turning it into something great. Most recently, her varied career has led to her working for Marvel Comics!

Brooke was undertaking her BFA in Illustration in New York when the fatigue and clumsiness that resulted in a number of ruined artworks was diagnosed as Multiple Sclerosis - at the age of only 21. Although she now feels that MS had crippled her career, Brooke has since used her disease to build a career as an artist, illustrator, and comic-creating multiple sclerosis fighter! 


FUMS 117 - Mind, Mood, and Memory in Multiple Sclerosis w/ Dr. Anthony Feinstein
#117
10/18/2022

MS is often described as an invisible disability. But as the disease progresses, the focus - of patients as well as medical professionals - can shift to more visible, physical symptoms, like mobility issues.

However, because the majority of people with MS are diagnosed in their 20s and 30s, the psychological and cognitive effects can all too often go untreated. And these symptoms are just as common as the outward ones. In fact, as you'll hear, these may be even more common, with 50% of all people with MS having at least one clinically significant episode of depression. 


FUMS 116 - Managing Daily Life as MS Progresses w/Jenn Powell
#116
10/04/2022

My guest today is Jenn Powell. She's an active advocate in the MS community, imparting her hopeful optimism to the real-life challenges facing those of us living with MS. Now with secondary-progressive MS, Jenn continues to elevate the patient voice to better the lives of our community.

Jenn is the Brand and Marketing Manager for BioNews, an organization that strives to create dynamic communities that give patients and caregivers a powerful voice. Jenn also writes for Multiple Sclerosis News Today (a subsidiary of BioNews) and is the host of the Multiple Sclerosis Podcast.

Jenn's attitude...


FUMS 115 - MSer Sue Casey says "Grab The Happy!"
#115
09/20/2022

If you're connected with Multiple Sclerosis in any way - whether you're a patient, or a caregiver, family member, or loved one of somebody with the disease - it's easy (and NATURAL) to live in the what-ifs. We can all wallow in the negatives - hey, there's a reason why this podcast is called FUMS!

But Sue Casey, my guest today, tries to live by a different mantra - "Grab The Happy!"

Sue has been living with MS for nearly 50 years. This means that when she was first diagnosed, they didn't have MRIs or any...


FUMS 114 - The Art of Rebellion With Kick-Ass MSer Lydia Emily
#114
09/06/2022

Content warning: this episode includes a discussion about Lydia's personal experiences of Primary Progressive MS and her plans with regards to Death with Dignity, aka Suicide.

Lydia Emily Archibald is an artist to her core. She was born in Chicago to globe-trotting activist parents, and this laid the foundation for her socially-conscious and politically-motivated artworks, including the creation of large-scale murals. Lydia Emily's work has been featured at gallery shows in Milan, Berlin, Los Angeles, New York, Miami, Washington DC, and San Francisco. 

After battling cancer, Lydia was diagnosed with Multiple Sclerosis in 2012. S...


FUMS 113 - An Invitation From Dr. Terry Wahls To Be Part of Her Latest Study
#113
08/23/2022

More and more often, we're all hearing and talking about the use of diet and lifestyle as a way to manage chronic illness - and not just on the FUMS Podcast! In this episode, Dr. Terry Wahls (now officially our most featured guest) is here to tell us all about how we can get involved in her latest study, which asks a couple of simple but important questions: Can diet improve my quality of life with MS? And which diet is the best? 

If you don't know by now, Dr. Terry Wahls is an Institute for Functional M...


FUMS 112 - Using Pilates to Combat MS with Mariska Breland
#112
08/09/2022

The truth has been out for a long time - exercise is good for MS and other neurological conditions. But of all of the programs suggested for us, how many of them really know what it's like to live with MS?

My guest today is Mariska Breland. She was a video producer living a very high-stress life when she was diagnosed with MS at the age of 27. She started doing Yoga and Pilates and eventually began teaching Pilates, ultimately turning it into her full-time job. 

Mariska has created multiple neuroscience and exercise workshops, including Pilates f...


FUMS 111 - The Owner's Manual for MS with Author Debbie Petrina
#111
07/26/2022

I don't know about you, but when I was diagnosed with MS my medical care team couldn't answer all of my questions. Although, to be honest, the stress and cog fog meant that I forgot most of the questions I wanted to ask anyway. And the pamphlets that were forced on me just didn't cut it. 

What I really needed was an operator's manual. But that doesn't exist, right?

Well


Over the past four decades, Debbie Petrina has lived with MS and spoken to thousands of people in the MS community - via soc...


FUMS 110 - Using Intermittent Fasting to Manage Your MS with Cynthia Thurlow
#110
07/12/2022

I've talked before about diet and lifestyle as a way to manage Multiple Sclerosis. It's an exciting area, with more research being done all the time!

If you've been researching this for any time, you've probably heard about Intermittent Fasting (IF). But what is it? And how could this possibly help with your MS?

My guest today is Cynthia Thurlow. She is a nurse practitioner, the CEO and founder of the Everyday Wellness Project, and an international speaker, with over 10 million views for her second TEDx talk, Intermittent Fasting: Transformational Technique.

In this...


FUMS 109 - Real Talk About MS with Jon Strum
#109
06/28/2022

Jon Strum's wife, Jeanne, was an avid biker, hiker, and writer when she was diagnosed with Progressive MS. Almost immediately, she became so severely disabled that Jon stopped working and became Jeanne's carer and advocate. He continued in this role until Jeanne passed in February 2020.  

Part of Jon's advocacy was (and continues to be) hosting the popular RealTalk MS podcast. As you'll hear, Jon started the podcast while sitting on a scientific committee as a member of the International Progressive MS Alliance, to bridge the gap between patients and caregivers and the scientific community. Since its launch i...


FUMS 108 - A Cause for MS Has Been Found
#108
06/14/2022

In January of 2022, one of the biggest MS news stories EVER was announced - that MS is probably caused by infection with the Epstein-Barr virus (EBV), according to a study led by Harvard T.H. Chan School of Public Health researchers. Now, this link has long been suspected but here was proof!

My guest today is Kjetil Bjornevik, the lead author of the publication that got us all excited. Kjetil is an epidemiologist whose focus is on finding risk factors and better treatments for neurological diseases, including multiple sclerosis.

As you'll hear, by opening the...


FUMS 107 - MS Advocate Jenna Green
#107
05/31/2022

Jenna Green worked for 15 yrs in corporate marketing, when she realized that she had to leave for the sake of her mental health! So she began working freelance - but the hustle culture, combined with chronic pain she experienced following a car accident, led her to a diagnosis of Multiple Sclerosis in 2016.

On what should have been her first Tysabri infusion, she learned that her insurance wouldn't cover the treatment. This was Jenna's first experience of Step Therapy or Fail First practices - where, in order to control costs, insurance companies restrict coverage of expensive therapies unless...


FUMS 106 - Caring for Caregivers with Elizabeth Miller
#106
05/17/2022

If you listen to this podcast, there's a strong chance that you receive care - from a friend, a loved one, or from within your community. You might also be in the position I was in a few years back, caring for elderly relatives, young children, and myself as a person with a chronic illness!

My guest today is Elizabeth Miller, a family caregiver, caregiver advocate, speaker, author, podcast host, and Certified Caregiving Consultant. Her personal experiences of caring for aging parents with chronic and terminal illnesses and for a sibling with developmental disabilities inspired her to...


FUMS 105 - Finding "Grace" in MS with Novelist Delaney Parker
#105
05/03/2022

"Grace" is a novel about a young woman navigating married life, sex, parenting, and friendship. Plus, the lead character is doing all this while dealing with an MS diagnosis. 

It was written by Delaney Parker, an author who lives in upstate New York with her family. She was diagnosed with Multiple Sclerosis in October of 2008, and it was her diagnosis that inspired Delaney to write "Grace."

As Delaney says in this interview, the character's diagnosis is just a part of who she is, and the novel is not centered around MS. I loved this book's d...


FUMS 104 - Trauma and EBV as the Trigger for MS w/Tammy and Terry of Twins Coast 2 Coast
#104
04/19/2022

Identical twins Tamara Kahn and Terry Hord (née Harber) were born eight minutes apart and were both athletic as children. But they can now look back and see the fatigue and heat sensitivity they both experienced as early signs of the diagnosis to come - along with the trauma of losing their mother to cancer and the Epstein-Barr Virus that they contracted at the age of 15.

In their 20s they received identical MS diagnoses, but a history of voluntary charity work led them to create an MS patient advocacy hub called TwinsCoast2Coast. They aim to i...


FUMS 103 - Diet and Lifestyle to Halt Your MS w/Dr. Terry Wahls
#103
04/05/2022

The idea of using diet and lifestyle changes as a way to manage MS was still pretty radical until fairly recently. But as more research is done, the benefits are becoming more recognized day-by-day.

My guest today is Dr. Terry Wahls, who has been studying the links between lifestyle and MS outcomes since getting her first symptoms twenty years ago. After being confined to a tilt-recline wheelchair, Dr. Wahls restored her health using a diet and lifestyle program of her own devising.

Dr. Wahls previously appeared on the FUMS podcast back in 2018, so I figured...


FUMS 102 - GYST: Estate Planning with MS part 2
#102
03/22/2022

This episode is the second part of my interview with Marty Shenkman, an attorney whose private practice concentrates on estate planning. When his wife was diagnosed with MS, he recognized how different planning looks for people with chronic illness and it changed his whole approach to estate planning. 

If you haven't heard the first part, please visit https://fumsnow.com/fums101

When I announced that I'd be talking to Marty about estate planning with a chronic illness, I was inundated with questions from the FUMS community. So in part two of my interview, we try t...


FUMS 101 - GYST: Estate Planning with MS part 1
#101
03/08/2022

This is the first in a series of episodes where I'll be looking at the messier parts of life - estate planning, divorce, digital death, end-of-life planning, wills, etc. Y'know - fun stuff like that. And in true FUMS style, I'm calling the series G.Y.S.T. - "Get Your Shit Together"

Sooner or later, we are all going to have to start thinking about what happens at the end of our life - whether we have a lot or a whole lot of nothing, it's a fact of life! And while this is the same...


FUMS 100 - The 100th Episode!
#100
02/22/2022

It seems crazy to me but my ‘lil podcast is 100 episodes old today! So in a change from our regular schedule, I’ll be taking a personal look back at the highs (which are many) and lows (not so much) of my podcasting journey since launching in 2015.

I’ll be talking a bit about why I started the podcast, my favorite episodes, as well as sharing some comments which have been sent in by some of you, the wonderful FUMS community.

Here’s to the next 100 episodes. And don’t forget to speak to this stupid dis...


FUMS 099 - The Psychology of MS with Dr. Meghan Beier
#99
02/08/2022

Even without a pandemic, a life with MS can be a lot to deal with. So, many of us will seek help for our mental health at some point. 

I know from personal experience how frustrating it is to have to explain exactly what MS is whenever I’m speaking to a new mental health therapist. Which is why I’m delighted that today’s guest is working to educate therapists about psychological difficulties that are specific to a variety of chronic illnesses, including MS.

Dr. Meghan Beier is a psychologist at Johns Hopkins University School...


FUMS 098 - HSCT and Life and Death Choices with Jenny Angus
#98
01/25/2022

Jenny Angus was very physically active, with a career in property management, when what she calls the Poltergeist took up residence in her life. Originally misdiagnosed in 2004, it took 10 years before she received her correct diagnosis of MS - during which time her disease had been left to run unchecked. Along the way, she had to stop her artistic career, which was so closely tied up with her identity. 

Jenny's story is a difficult one. She has investigated assisted dying, an arduous process that is legal in Canada. But with the help of her friends, family, and c...


FUMS 097 - Giving the Finger to Primary Progressive MS with Adam Powell
#97
01/11/2022

Adam Powell was a self-proclaimed beast until 2019 when he was diagnosed with the most aggressive case of Primary Progressive MS his doctor had ever seen. Over the course of 5 weeks, he lost the ability to walk and drive, which, combined with the onset of the COVID-19 pandemic, led to an intense grieving process.

However, with his own unstoppable nature, combined with a healthy dose of FUMS attitude, he has found ways to cope. Through the use of physiotherapy, exercise, yoga, and light therapy, he even carried out a cross-country solo road trip! 

I think his s...


FUMS 096 - Let’s Talk About Sex (Differences), Baby w/Dr. Rhonda Voskuhl
#96
12/28/2021

It is a truth universally acknowledged that women are up to three times more susceptible to developing MS than men. But men are more likely to have worse outcomes than women, as far as disability accumulation is concerned.

We know it to be true - anecdotally, at least. But have you ever wondered why? Well, my guest certainly has.

Dr. Rhonda Voskuhl is the Director of the UCLA MS Program, holds the Jack H. Skirball Chair in MS, and is a Professor in the UCLA Department of Neurology. She has received national and international awards...


FUMS 095 - The Patient Movement Rises UP with Terry Wilcox
#95
12/14/2021

It used to be the case that, if you were a person who had a chronic condition or a disability, you didn't have much of a voice. In fact, the idea that the patient was any kind of expert in their own health was just unthinkable! But with the rise of social media and patient advocacy, we are no longer satisfied with being the person to whom healthcare just happens.

We all know that the struggle is real, and seemingly endless. But my guest today is someone who has dedicated her life to helping patients find their...


FUMS 094 - The National MS Society's MS Navigators Program
#94
11/30/2021

For most of us in the US, when we join the lucky MS'ers club, the first place we turn is likely to be the National Multiple Sclerosis Society.

The National MS Society's vision is a world free of MS - something which we can all get behind! But while the bastard refuses to die, they also focus on ensuring that people affected by MS can live their best lives.

One of the ways in which they do this is the MS Navigator program. The Navigators exist to connect you with the help you need, wherever...


FUMS 093 - Eating Healthy Over The Holidays with Alene Brennan
#93
11/16/2021

As the song says, it’s the most wonderful time of the year! And many of us traditionally mark the season - and please know that the FUMS Podcast is a no-shame space - by giving up on eating and living in a healthier way. 

But increasingly, many of us living with MS and related chronic conditions are managing our health through nutrition and lifestyle. So how do we keep this up without missing our family traditions?

Luckily, Functional Nutrition Counselor and Chef Alene Brennan is on-hand to show us the way.

Alene kno...


FUMS 092 - Music Therapy For MS with Dr. Cindybet Pérez
#92
11/02/2021

If you're anything like me, music is a big part of your life. It can lift me up, it can wipe me out, but it's always there. And you'll likely also have seen incredible videos which show people with Dementia or Alzheimer's responding to music when they otherwise are non-responsive.

But did you ever think that music could make a difference to the health of people with MS? 

Dr. Cindybet Pérez is a board-certified clinical and neurological music therapist practicing in Puerto Rico. A faculty member at the Pontifical Catholic University, she also participated in...


FUMS 091 - Move It Or Lose It with MS Specialist Fitness Trainer Kathy Chester
#91
10/19/2021

“Which part of our body are you ok with losing?” - this is the question that fitness trainer Kathy Chester will sometimes ask her clients.

Prior to opening Disrupt Fitness Gym, Kathy had been a leader in the fitness industry for almost a decade. However, it wasn’t until she was diagnosed with Multiple Sclerosis that she decided the time had come to take it to the next level.   

Having MS while being an instructor has allowed Kathy to not only push past places she'd been told she would never physically reach but has provided her with...


FUMS 090 - Heat Intolerance and Exercise with MS Specialist Dr. Gretchen Hawley
#90
10/05/2021

It’s a third-time visit for MS-specialist Physical Therapist Dr. Gretchen Hawley. She began treating people with Multiple Sclerosis during her first year of professional practice. The positive results she saw in her patients led her to specialize in the treatment of MS, taking every opportunity to attend workshops and conferences dedicated to improving lives through Physical Therapy.

She has previously appeared to talk about the benefits of PT for People with MS, and the launch of her online MSing Link wellness program - which coincided with the global COVID-19 shutdown. 

I’ve been hearing her n...


FUMS 089 - MS, COVID-19 Vaccines, and the Booster Shot with Dr. Brandon Beaber
#89
09/21/2021

Well, COVID-19 doesn't seem to be going away anytime soon, does it? You had questions about the COVID-19 vaccines and booster shot and Dr. Beaber had answers.

Dr. Brandon Beaber is a board-certified neurologist with subspecialty training in multiple sclerosis and other immunological diseases of the nervous system. He posts new videos about MS on YouTube every Wednesday AND he has written a book that features amazing stories and practical advice to enable people to develop resilience as they live with MS.

In my conversation with Dr. Beaber, we also talk about diet, exercise, and...


FUMS 088 - Psychedelic Experiences, Frogs, and MS - with Neurobiologist Caitlin Thompson
#88
09/07/2021

I, like many of us, have been watching with interest the current research into the potential benefits of psychedelics in the treatment of depression - because, obviously, depression is pretty common when you're dealing with a life-changing MS diagnosis!

Maybe like me, you asked yourself, "Hmmm. I wonder if anyone has been looking into its potential usage for chronic illnesses like MS?"

Well, guess what?!

Neurobiologist Caitlin Thompson is an independent scientific researcher studying the potential of psychedelic compounds as a novel approach to the treatment of autoimmune conditions. During her healing process...


FUMS 087 - Let's Talk About Sex - and MS - with Dr. Fred Foley
#87
08/24/2021

There are countless ways that MS can MesS with your life. But one of the most infuriating, most common, and most difficult to talk about, is sexual dysfunction. 

Obviously, this is something that can affect anyone. But a shocking 80% of people with MS report having sexual concerns or issues. The symptoms can include loss of sensation to an inability to climax, and the causes can run the whole gamut from depression, poor body image, and medications to treat your MS and associated conditions.

So Dr. Fred Foley is here to help you bring your sexy b...


FUMS 086 - Funny Shit About MS with Comedian Shari Short
#86
08/10/2021

If you’ve been following us for any amount of time, you’ll know that we always give a big FU to MS (the clue’s in the name!) And even though we’ll have our ups and downs, we try to inject a little humor along the way.

Now, we know that MS is NO JOKE. But if you allow yourself to see the funny side of it occasionally, it can help with getting through the day-to-day.

My guest this week is Shari Short, a comedian, writer and, naturally, a developmental psychologist working in healthca...


FUMS 085 - Amber Tuma Talks About MS & Her Rock & Roll Lifestyle
#85
07/27/2021

Amber Tuma was studying for her music degree in Texas and raising two kids with her husband when MS reared its ugly head. So she says FU to MS by continuing to write and play music with her band The Gallows Crow.

Hear the inspirational story of how Amber refuses to let MS get in the way of how she lives her life. Go, Amber!

Topics covered in this episode include:

Amber’s life pre- her MS diagnosisThe story of her initial symptoms, her quick diagnosis, and an unknown link to MS  How Amber han...


FUMS 084 - Run A Myelin My Shoes with Cheryl Hile
#84
07/13/2021

When Cheryl Hile’s neurologist told her to “lower her expectations”, the marathon runner showed that she was an FUMS’er to her core. Adopting the mantra “I do what I can and never give up”, she has now completed 56 (FIFTY-SIX!!!) marathons, 41 following her diagnosis.

After running 7 marathons on 7 continents in 12 months, Cheryl founded the running and walking team Run A Myelin My Shoes to challenge the perception that strenuous exercise is bad for MS.

Listen in as I chat with this amazing MS Warrior and even get strong-armed into taking part in the 2021 event!

Topics...


FUMS 083 - Don’t Just Survive - THRIVE! with Jen DeTracey
#83
06/29/2021

I’m sure that all of us can agree that MS sucks for a lot of the time. But having an FUMS attitude means not just surviving with MS - but THRIVING!

Jen DeTracey is a certified coach and the founder of Women Thriving with MS. In 2010, Jen was a successful consultant and professional speaker when, during a speaking tour, she found she could barely walk, write or smile. 48 hours later she was diagnosed with Multiple Sclerosis. At that time, she thought she would never be able to work again.

Jen has been li...


FUMS 082 - The Natural Way to MS Health with Naturopath Elizabeth Yarnell
#82
06/15/2021

I hear from a lot of people with MS who have had success in treating their condition with Naturopathy and adopting an anti-inflammatory diet. So who better to talk to about this than a renowned Naturopath who also has MS?

Since being diagnosed with multiple sclerosis at age 30, Elizabeth Yarnell has spent the past 20 years studying how to manage autoimmunity naturally as a traditional naturopath. Her focus is on how anti-inflammatory therapies can influence the course of MS.

Through her work with hundreds of people with MS and other autoimmune conditions, Elizabeth’s personalized natural th...


FUMS 081 - Butts, Guts, and MS with Neurogastroenterologist Dr. David Levinthal
#81
06/01/2021

As part of the rich buffet of joy that MS lays out for us, problems with your gut and pooping have to be right at the top of the charts - or the shit-list, if you will.

Just to state it for the record, not everyone with MS will have these issues - as we know, MS isn’t a one-size-fits-all deal. But it is something that a lot of people deal with, which is why we’re covering it here.

So my guest today is Dr. David Levinthal, the Director of the Neurogastroenterology and Moti...


FUMS 080 - Your Doctor Is Your Employee
#80
05/18/2021

In my life, I spend a lot of time in various MS-related spaces. Having a community that understands what I’m going through, and where I can offer support, is one of the blessings in my life.

But even with all of that, there are still things about these spaces which concern me. So in this solo episode, I’m getting a few things off my chest! 

And in all of this, I’m not trying to cause offense. I’m just saying that you should value your own health, so be careful where you get your...